the last burnt sienna crayon

About a month ago I decided that I didn’t like my life and I didn’t want it anymore. So I went to my doctor and asked if I could have a new one transplanted in the place of my existing one.

We discussed all the different lives that medical science could make available to me, and having done my research, I knew which one I wanted to try.

But my doctor said, no, they had never transplanted that kind of life before and wasn’t confident enough to try it. But I could have this other one, over here.

So thinking that it was my only option to get rid of the life that I had, I agreed. Doctor wrote me a prescription and said that my new life should start to become evident in about 2 to 4 weeks.

Dubious, but obedient, I took the script to the pharmacy, got the little tablets and took them home. Still dubious, I wanted to look up what the features of my new life would be before I committed to it, and. . .

. . . NO!!! I don’t want that kind of life either!!! So back I went to my doctor, and asked once again for the original type of life that I wanted to transplant mine for. Doctor’s head shook, and I was sent to the transplant consultant,

The Wizard of Oz!

who would give me further recommendations and take responsibility for the proceedure.

So off I travelled down the Yellow brick road, wondering if I was truly going to be seeing a wise and grey bearded, old man who would fix my life for me, or simply a short little coward behind a curtain who was pulling levers and shooting flames up to make himself look bigger.

Again, we talked about the various lives that I could possibly trade my failing one for, decided that whether he was wise or not, I would have to take his advice as the only way I could trade the old for the new, so I said yes.

The wise and/or presumptuous wizard wrote his recommendations to my doctor, who sent me off to get more little pills, and told me that he would send some needles in a few weeks time to make the transplant permanent. Pills would perform the transplant, syringes would prevent rejection. All of these things, I was told, would start to transform my old unwanted life into a shiny new one.

(to be continued. . . )

A lot of people believe there is “a way” to do things.

A lot of people are afraid that they haven’t found that “way” and are afraid that something bad will happen if they have done something “wrong”.

A lot of people are afraid to follow their own instincts and so look to others to “show them the way”, and eventually feel trapped between choices that they are not happy making and a feeling of helplessness in the face of some fatalistic dictum. It causes an awful lot of people an awful lot of anxiety.

Of course, I’m talking about me here and assuming it applies more widely. I write that from my own experience, not really from observation. For, I have most frequently been one of those people. In fact, I believe that I have probably most often been [allowed myself to be] subject to the feeling that my role on this planet was was simply to carry out someone else’s orders, not to make my own. So far I have always been the vassal, not the master. I think I was always waiting for that mythical time when having paid my dues, that I would get my reward and gain some kind of power, and suddenly be respected and listened to.

But to be quite honest with you, I’m not really feeling like waiting patiently for something that probably isn’t going to happen naturally in response to any kind of dutifulness on my part. I’m not in that kind of mood at the moment. I feel more like throwing out the rule book because I’m starting to realise that there was never an agreed contractual end to my serfdom. So I’m going to institute my own little personal peasant’s revolt, and see how it goes in maybe doing things my own way for a little bit.

One of the most helpful things someone said to me recently (besides all of your lovely and supportive comments here, that is. thank you!) was to remember that this is all just “trial and error”. The topic of discussion was MS, living with MS, treatments for MS, and “the way” that you are maybe “supposed” to do things. He just said “remember, no one actually knows anything for definite about this bloody illness anyway, or about most of the drugs used to treat it for that matter. You just have to try things, come up with your own thoughts and adjust accordingly.”

There was a lot of freedom in that idea. If I “do it wrong”, what does it actually matter anyway?

Who am I?

You tell me, because I’m not sure anymore.

I’ve tried to collect together all of the things which I’ve known myself by over the years, but it just doesn’t seem to make a coherent whole. It doesn’t make any sense. And then I try to collect together all of the things that have influenced or even directly caused those things which I have known myself by and I realise that for a large percentage of my life, I have come up with some excuse or other for “not being myself today/this week/month/year/decade/etc”. And if percentage wise I’m spending more time making excuses than actually ‘being myself’, then how can I really claim that the me that I am less of the time is the ‘real’ me?

For a large percentage of the time, I have always felt that my life has taken ‘time outs’ and I, the ‘real me’, was just sitting in waiting for whatever influencing factor that was masking me to go away, or for me to finally achieve the back to the real me’ state.

But I must have been mistaken. Because the mask never comes off. It only seems to change. It changes from day to day and year by year. And saying that makes it sound like it really must just be that ‘changing thing’ that we’re all supposed to do as we go through life anyway, but for some reason it doesn’t quite feel like that. It doesn’t quite feel authentic. It doesn’t feel like a natural evolution.

My striving has always been to be my most authentic and honest self, like some mythical, unblemished, Platonic Form or something, to all and particularly to me. However, whereas I used to think I knew who or what that authentic Form was and what she liked and how she thought and how she acted, I’m just not so sure anymore. When do the blemishes become no longer something to sweep away and make excuse for, but become the thing itself? What if all my blemishes aren’t something added to cover up me, but are actually now me?

If you start with a table and break off one of it’s legs, you can probably fix it back on, with the right glue and nails. No harm done in the end, it’s still a table. But once you start to take a chisel to the table and gouge out some big gaping holes, it starts to become something a bit different. And you no longer wait for it to be fixed back to its ideal state, you have to accept that it is now either a sculpture or junk, and not useful as a table any longer.

And lately I’m starting to feel a bit like that chiseled table, starting to accept that there is no ideal Form for me to become anymore. And I’m wondering how much I get to control what the finished sculpture of me will look like. Or do I simply call it junk, throw it all out and start from scratch? But if that were the case, what do I do with all the stuff left over, from everything that has gone before, the thought patterns, the beliefs, the dis/likes, the behaviours?

I think in the end I just have to keep chiseling. But without my Platonic Form to model myself after, how do I know what my eventual goal is anymore?

Today was confusing.

Today I talked.

A lot.

I was nodded at.

A lot.

But I’m not completely certain about the level of actual communication that we were able to achieve.

I had made decisions, presented my cases, then was offered other choices, then stuck to my decisions, then didn’t, then considered other options, was allowed only certain routes, fully allowed others, was looked at like I was insane (how I hate scrunched up faces), until I’ve traveled back and forth so much, that I’m not even sure what happened in the end and what will come of it.

But I’m not very hopeful. Whatever it was that happened.

If I had my life to live over again, I wish:

• I had flown home for Grandma’s funeral
• I had flown home before the family house was sold
• I had flown home more often
• I had never tried to do many things
• I had never tried and failed to do many things
• I hadn’t allowed myself to be manipulated so frequently
• I hadn’t been so naive whilst thinking that I wasn’t
• I had tried more illegal drugs and steered right clear of the legal ones
• I had never left the job at the Uni, no matter how ill I was going to get
• I hadn’t been so over confident that I would get another one
• I had been more patient
• I had shown more forbearance
• I had had more fortitude
• [edit]
• I had waited a bit longer to buy property
• I had gone to more gigs and fewer protests/lobbies
• I hadn’t said some things and that I had said some other things
• I hadn’t kept some friends and that I had kept others better
• I hadn’t kept so much
• I hadn’t lost so much
• I hadn’t forgotten so much
• I had had more fun
• I hadn’t been so serious
• I had loved better
• I had valued better
• I had studied better
• I had managed money better
• I had travelled more
• I had practiced my more music
• I had worried less
• I had drunk less
• I had argued less
• I were less ambitious
• I were more content with not getting what I want
• I were more thoughtful
• I were more grateful
• I were more graceful
• I had been more gracious
• I had broken more learned behaviours
• I hadn’t changed
• I had changed
• I hadn’t grown so cynical
• I had read more books
• I had been a better Christian
• I had been a better mother
• I had been a better wife
• I had been a better friend
• I hadn’t thrown so many pearls to so many pigs

I’ve had a rough afternoon. I’m not going to shout about it here, in fact, I am learning more and more that, especially in regards to issues like these, where I must stand alone in my opinions, but find a way to stand up for them all the same. It is best not to say anything at all. I know it just invites invalidation. But, once again, my definition of what is right, doesn’t match everyone else’s. But I still think it’s right.

I’ve had a rough afternoon, and the love I feel for my daughter has almost never been stronger than it has been recently and my wanting the best for her has almost never been stronger, and my fighting spirit, like that Momma bear protecting her cub, has almost never been stronger. It’s just hard when a mum defines ‘the best’ differently to how everybody else does, when they simply can’t see what I’m talking about.

But then I’ve felt a bit lately like someone who has been trying to cope having lost one of their senses that they usually rely on. I’ve felt a bit lately like I’m not ‘clicking’ with other people quite right. I’ve felt like I’ve lost my social awareness. I’ve felt a bit like an alien again.

I’ve had a rough afternoon, and all I can think of is this song. And reading it, I am crying again. And I haven’t actually done that in awhile now. Until today.

Flowers are Red
by Harry Chapin

The little boy went first day of school
He got some crayons and started to draw
He put colors all over the paper
For colors was what he saw
And the teacher said.. What you doin’ young man
I’m paintin’ flowers he said
She said… It’s not the time for art young man
And anyway flowers are green and red
There’s a time for everything young man
And a way it should be done
You’ve got to show concern for everyone else
For you’re not the only one

And she said…
Flowers are red young man
And green leaves are green
There’s no need to see flowers any other way
Than they way they always have been seen

But the little boy said…
There are so many colors in the rainbow
So many colors in the morning sun
So many colors in the flower and I see every one

Well the teacher said.. You’re sassy
There’s ways that things should be
And you’ll paint flowers the way they are
So repeat after me…..

And she said…
Flowers are red young man
And green leaves are green
There’s no need to see flowers any other way
Than they way they always have been seen

But the little boy said…
There are so many colors in the rainbow
So many colors in the morning sun
So many colors in the flower and I see every one

The teacher put him in a corner
She said.. It’s for your own good..
And you won’t come out ’til you get it right
And are responding like you should
Well finally he got lonely
Frightened thoughts filled his head
And he went up to the teacher
And this is what he said.. and he said

Flowers are red, green leaves are green
There’s no need to see flowers any other way
Than the way they always have been seen

Time went by like it always does
And they moved to another town
And the little boy went to another school
And this is what he found
The teacher there was smilin’
She said…Painting should be fun
And there are so many colors in a flower
So let’s use every one

But that little boy painted flowers
In neat rows of green and red
And when the teacher asked him why
This is what he said.. and he said

Flowers are red, and green leaves are green
There’s no need to see flowers any other way
Than the way they always have been seen.

Sometimes, just sometimes, mind you, I begin to suspect, only slightly, that it might be ok, just ok, you understand, not desirable or right or rewarding, and certainly not auspicious, but just simply ok. . .

. . . to stop trying so hard.

At least for a few minutes, anyway.

it’s a strange thing.

it’s a strange thing to wake up one morning after twelve years in a practical drug induced coma and find that nothing hurts anymore. Just that quickly.

No, not a coma, because there was still life there, just an altered one. More of a zombie, than a coma. It’s a complex explanation, what I mean by that, but it doesn’t feel that urgent to elucidate right now. Suddenly, I don’t feel that I have to.

My friends haven’t even relised. People are still acting towards me as if I worry, as if I’m anxious or sad. They say “oh don’t worry… blah blah blah” and pass on pieces of advice to help me through the crisis. . . when I’m no longer actually in one. They mean well. But’s it’s clear that my old state of anxiety made others anxious, and I am sorry to have been a burden. I don’t know who I am yet, myself, so I don’t say anything and I smile and nod. . . and wait until either I’m better at explaining or anybody wants to know enough to ask me something about it.

I have very little memory other than things that I have written either on my blogs or in my journals, and I don’t necessarily currently want to review.

Recently, after I woke up, I got curious as to what had happened, so I went to my doctor and asked to be made a print out of every perscription drug that I had been perscribed since 1997 and the date ranges that I was on each. This is a small charge, but my right to ask for under the Data Protection Act.

The print out came to 50 pages.

450 individual perscriptions, some repeated for years, some one offs.

I counted 38 oral medications, 22 topical skin allergy treatments, 20 individual perscriptions for 7 different antibiotics and 6 different anti depressants perscribed over 12 years (one of which, I had been on for several years and at several different times, but is now removed from the market, because patients started dying of liver failure while being on it).

Some of the drugs were as benign as moisturising lotion and ibuprofen, others as strong as pethidine, immunosupressants, an anti-narcoleptic and 3 different antipsychotics (percribed to me not for mental health reasons, but because they were known to have helped in various MS symptom treatment, like pain and virtigo. And no, they didn’t help me.) just to name a few.

Plus the list did not include any medication that I had been given during my 4 or 5 lengthy stays in hospital or scripts written directly by my consultants.

I have researched the side effects of each one and looked at the number of various ‘drug cocktails’ I was on and also tried to align what I was taking when different things happened in my life, and the pattern is shocking. I feel like I can be less hard on myself for having achieved so little over that time. I am aware that several of the things that I was on, and combinations thereof, nearly killed me. Litteraly, not figuratively. It feels a bit traumatising to realise that, and I’m not fully able to think about that yet.

This morning I sneezed and took an anti-histamine and my daily multivitamin. That was all I took. I’m ‘clean’.

I’ve weaned off of everything else, even the self injections.

It’s all out of my system and my brain and body has now got used to making and using it’s own chemicals again. (brains stop doing it for themselves after having it done for them after awhile.)

I feel good.

I haven’t had a panic attack since 18th of July, and I’m not even anxious about possibly having one anymore. I barely remember what it feels like. That doesn’t sound like a long time. But the difference is amazing!

I can pray again for the first time in a very long time. I won’t get into the spiritual side of all of this right now, but there is one. I don’t recognise myself, but I’m happy to wait… because for the first time in 12 years, I’m calm enough to do that. I’m hoping that I actually have another 12 to wait in.

It will be good to meet you all. . . again.

The window envelope sat on the bed waiting for, daring me to, face it.

“To the parent(s)/guardian(s) of ______ ”

Of course it’s a standard, administrative way to address correspondence to the parent(s)/guardian(s) of a child, but after our/my struggle to become the parent(s) of _____, I’d really rather not be referred to as the guardian(s) of _____.

Call me picky, but. . . some things still just rub the wrong way. some things still hold the memory, and I’d rather not.

I knew what the contents of the letter would be, and I knew I would have to open it. I knew that if I opened it I would have to read it, and I really didn’t want to, but thought I may as well get it over with.

Yes, it retold all the gory details of that unpleasant meeting in May, where it was made perfectly clear that I am completely wrong, though he, our professional correspondant, was aware of how controversial the argument was, though he was aware of how passionately I felt about the issue at hand, and how he could understand how i felt and how stressful the whole thing was, but in the end. . . i was wrong. A room of two senior professionals (one, top in the country), one junior, and another adult all stood on one side of the line drawn in the sand, and I slid my chair back, quite literally, to the other, ganged up on, and standing out. Was I that strong to stand on my own there? Am I still? No, I don’t think I can be that certain. Passionate, convinced, but not certain. This nonconformist not only has a sensitivity to rejection, but a fear of standing alone, and of being wrong.

He didn’t use the word “wrong“, per se, because when it comes to philosophy and ethics, you can’t really, and you can’t prove anyone as being “wrong“, you only really have the majority and what they say to prove your case. But he and his collegues made themselves perfectly clear. No one in this country would support me in my opinion, and as I live in this country, that’s what any respectable and responsible parent/guardian would do. . . in their opinion. And as far as anyone is concerned, their opinion is what counts, as I am not a top professional of this kind in the country, only a parent, for what it’s worth.

I still don’t think he is “right” but he is not “unfair”. I am sure I must conceed. Everything tells me that his arguments are hypocritical. . . but I’m not interested in arguments anymore. I’m done arguing.

Who decides what “right” we have to anything?! He was as much making a decision for her as I was. When it comes down to it, no body has any “right” in this matter anyway, not me, not him, not even HER, as God has all the rights and has made all the decisions already. We simply don’t get a choice. Facts are facts. What right do we have to pretend they aren’t so. Don’t we do a child a disservice in teaching them denial, in teaching them that everything is ok, when it may not be. The line in that sand has a row of ostrich on one side, and me on the other.

But I must learn to quell my passion when it gets shaken up. It would seem that it, the things that it holds to, and I, are “wrong”. And I can’t in all honesty say, swear, that those on the other side of that line are not “right”.

So I went shopping and bought myself a tub of Ben and Jerry’s.

in this life we make choices. we make choices based on hope. sometimes a hope for something better, sometimes simply hope that we’ve made a good choice. we then live with those choices in whatever way we find ourselves able to do that.

some people never live with their choices. they refuse to and stand against the world in a blockade of denial.

other choices are made for us. in that case we either have to find a way of living with it, or find a way of changing it. otherwise, we get stuck behind the blockade again.

(by the way, Hamlet is my favourite Shakespearian play.)

I want to teach my daughter [how to] to make [good] choices. I also want to give her a way of living with [accepting] the reality of the world that we live in.

they say that the best way to teach children is to model the behaviour.